Blogging my experiences living life with mast cell disease. Sharing how my husband (Nick), service dog (Leni), pet dog (Bonk), and I find ways to enjoy life even with a rare disease and trust God even when things feel out of control.

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Thursday, March 17, 2016

A Week With No Doctors?!?!

Can you believe I actually have an entire week with NO doctor appointments scheduled??

Yeah, me neither =P Okay, full disclosure...

I do have a physical therapy session on Thursday and return Sebastian (my heart monitor) on Friday, but actually seeing doctors...NOPE!

What am I going to do with all my free time??

Oh wait, I have an insurance company where the right hand doesn't even know the left hand exists, and if they do ever get to the point of acknowledging the others existence, they apparently don't speak the same language...

So my week has been spent trying to sort out these ongoing issues...I can't be the ONLY person with these problems...

Is it bad that I have a standing appointment in my phone to call my insurance company twice a week because I know SOMETHING will be a mess that we'll have to resolve??

I suppose I shouldn't complain too much, though...after all, they did suggest that I switch my medications to the 90-day mail order so I can save money. How thoughtful, right?

I just got notification that my medications finally shipped...5 weeks after we tried to get this started...a week and a half after I ran out of some of my meds...1 week after we had to go and buy glucose test strips out of pocket to make sure I wasn't having dangerously low blood sugars...

This has been a weird time for me recently. We are thrilled that the Xolair has been making a difference in my symptoms. At the same time, though, I'm having new symptoms that we don't understand. We're not sure if they are completely new or connected to the Xolair or another medication I recently started...or a result of the Xolair wearing off...so much fun! Plus I'm finishing up my 2 week heart monitor and will be finding out the results in another week.

It like I'm finally starting to feel better and now it's my doctors trying to convince us there really still is something wrong instead of us trying to get doctors to listen to how bad things have gotten. Is that a nice switch? Not really sure =P

Anyway, not much to share, just another chance to let you know what's going on in Bokatopia and say thank you (yet again) for your prayers. My next Xolair injections are coming up in the next couple of weeks plus lots of follow-up appointments with my endocrinologist, cardiologist, and my allergist. I also have another GI appointment at the beginning of April (can you believe we're already talking about April?!?).

UPDATE:
I had someone ask me recently how Leni has been doing. I thought about doing a separate post completely, but then I decided to just put this at the end as a reward for anyone who actually reads all the way to the end!

She is doing great! She is a big reason I've only needed epi once since 2015 and we've been able to avoid the ER since January. We are so thankful for her! She is able to catch my reactions about 10-15 minutes before my symptoms start so lower doses of my emergency medications can be used to control my reaction. This means I not always in a drugged state trying to recover from a severe reaction and hoping to not need epi. That's good news! She is getting more consistent with her alerts. She hasn't been wrong yet, if she alerts it has either been to a sugar or mast cell reaction. BUT she is not quite as consistent as we would like. She is great if I ask her to "check-it" but in distracting environments or when she is "off-duty" in her mind, she is not as focused on what my body is doing.

We went to Columbus to meet up with her trainer and visit with their training group a couple weeks ago and got some good tips on training activities to get her alerting more spontaneous and less having to always cue her. But we love her! She and I are growing in our partnership every day, and I am finding myself relying on her more and more to be in tune with my body and to help keep me safe. Like I've mentioned before, service dogs are considered medical equipment by the ADA, and she really is becoming just as important to my healthcare as other pieces of medical equipment such as my nebulizer or glucose meter.

Hope those of you that read all the way to the end of the post enjoyed that little Leni update! PLUS, today is Bonk's birthday so leave a comment and wish him a happy 5TH BIRTHDAY!!! He's getting so big =)